I just loved all these snuggley pictures with daddy - the best thing for his head is to lay flat so I got some cute pics of the Rachel and Micaiah hanging out with him.
Saturday, July 31, 2010
Thank You
We have been blessed by so many who have sacrificially given of their time to help us over these past couple months. We can never repay the great gifts of help we have been given, but we have learned so much through all those who have helped us. Although the first and foremost thing to say is thank you, we aren’t just thanking you for what you have done, but also for the example you have taught us and our children about unconditional love. It has made me think of a song that I run to by a Christian group 33Miles ~ One Life to Love. Thank you for taking a part of your lives to love us…..
You only get just one time around, you only get one shot at this….
One chance to find out, the one thing that you don’t wanna miss
One day when it’s all said and done I hope you see that it was enough
This one ride, one try, one life to love.
You only get just one time around, you only get one shot at this….
One chance to find out, the one thing that you don’t wanna miss
One day when it’s all said and done I hope you see that it was enough
This one ride, one try, one life to love.
Thursday, July 29, 2010
Ongoing....
This week was a bit of a rollar coaster for us at the mayo, but ended with good news!
On Wednesday morning Mark had another blood patch to try to 'plug' the leak. Sometimes doing this multiple times in different places can eventually find the hole and fill. Unfortunately this did not work/help. Later that same day we met with the neurologist who had since our first apt read Mark's MRI from Stevens Point and had seen the results of the lp. He was quite concerned about the low pressure reading. He also had some concerns about a tumor he saw in the thalamus (sp?) although it was very small. He therefore had ordered a visit with the neuro-surgeon to discuss futher options for dealing with the low pressure and to address the tumor. However that apt was not until Thursday afternoon. Needless to say, we were quite worried and concerned Wednesday night/thursday morning wondering about all these things. In the meantime we've also been waiting for results on the biopsy done to test for melanoma.
BUT todays apt went GREAT - the neurosurgeon is not at all concerned about the tumor, he said it's quite possible Mark has had it since birth, and we should not concern ourselves with it and none of his symptoms are related to where it is. The risk of doing something with it at this point is too great. Therefore, they will do another MRI in 6 months to monitor it and if there is no change then that is no worries. We also got the results back from the skin biopsy which was NEGATIVE - hooray! So both of those things were wonderful news. So back to the CSF we now are looking at getting an MRI of the spinal column to see if they can find if the fluid is pooling anywhere (this would be a great way of determining where the leak is). And two tests called a milogram and cisternogram (sp???) If the MRI is conclusive we can skip the other two tests and if the milogram is conclusive we can forego the cisternogram as well (which would be great since that is actually dealing with neuclear medicine, which sounds a little scary to me).
The doctors are suspicious that either he has multiple smaller leaks or one large tear and that is why the blood patches are not working and nothing else is working either. So that is a bit frustrating that we still seem to be fighting our way through to try and get him some relief, HOWEVER we totally trust the doctors here. The reasons things go slowly is because of the tests and things that are run need to be spaced apart by certain intervals to protect from infection and other things. We ask many questions until we understand and know why they are doing things the way the are. The doctors here are wonderful. It's not as simple as it sounds we are finding though. Thank you for all the prayers, this may be another couple of weeks before we have a solution, but we'd rather be safe and slow then fast and sorry later.
On Wednesday morning Mark had another blood patch to try to 'plug' the leak. Sometimes doing this multiple times in different places can eventually find the hole and fill. Unfortunately this did not work/help. Later that same day we met with the neurologist who had since our first apt read Mark's MRI from Stevens Point and had seen the results of the lp. He was quite concerned about the low pressure reading. He also had some concerns about a tumor he saw in the thalamus (sp?) although it was very small. He therefore had ordered a visit with the neuro-surgeon to discuss futher options for dealing with the low pressure and to address the tumor. However that apt was not until Thursday afternoon. Needless to say, we were quite worried and concerned Wednesday night/thursday morning wondering about all these things. In the meantime we've also been waiting for results on the biopsy done to test for melanoma.
BUT todays apt went GREAT - the neurosurgeon is not at all concerned about the tumor, he said it's quite possible Mark has had it since birth, and we should not concern ourselves with it and none of his symptoms are related to where it is. The risk of doing something with it at this point is too great. Therefore, they will do another MRI in 6 months to monitor it and if there is no change then that is no worries. We also got the results back from the skin biopsy which was NEGATIVE - hooray! So both of those things were wonderful news. So back to the CSF we now are looking at getting an MRI of the spinal column to see if they can find if the fluid is pooling anywhere (this would be a great way of determining where the leak is). And two tests called a milogram and cisternogram (sp???) If the MRI is conclusive we can skip the other two tests and if the milogram is conclusive we can forego the cisternogram as well (which would be great since that is actually dealing with neuclear medicine, which sounds a little scary to me).
The doctors are suspicious that either he has multiple smaller leaks or one large tear and that is why the blood patches are not working and nothing else is working either. So that is a bit frustrating that we still seem to be fighting our way through to try and get him some relief, HOWEVER we totally trust the doctors here. The reasons things go slowly is because of the tests and things that are run need to be spaced apart by certain intervals to protect from infection and other things. We ask many questions until we understand and know why they are doing things the way the are. The doctors here are wonderful. It's not as simple as it sounds we are finding though. Thank you for all the prayers, this may be another couple of weeks before we have a solution, but we'd rather be safe and slow then fast and sorry later.
Tuesday, July 27, 2010
Moving Along
Monday we went in for an lp (lumpar puncture - otherwise known as spinal tap) to measure the pressure and check for infection. A normal reading would be 80-200 (roughly) and Mark's opening pressure was low 50's and closing pressure low 40's (average about 44 I think). They also read his mri at mayo and from these 2 test they gave us 4 new apts plus keeping our original one that was scheduled for Wednesday. He will have a procedures done Wednesday morning similar to what they did in SP just to see if that helps. They we meet with the neurologist to plan where we go from here. He also sees a neurosurgeon, but that is simply to discuss all the rest of the possibilities. So here are our questions and what we do know:
Who? Mark
What? leaking spinal fluid
When? don't know when this started, and they don't think they will ever be able to answer that really.
Where? that is what we are currently in the process of finding this week
How? to fix it will depend on where the leak is - easier to do if in the spinal column (back) vs. the head.
Why? we don't know why this happened, he doesn't fit any of the "normal" reasons people get these, it's possible that we will know once they discover where the leak is why it started, but like the when we may never know. They also have told us that once you 'spring a leak' it's more likely to come back.
Hope this answers some of the questions you may have. It's a process to go through. But when dealing with things like brain and spinal fluid the less they have to do the better because that decreases risk of infection of bumping something that could cause other damage. We feel very comfortable and confident wtih the doctors where we are, they are taking good care of Mark and explaining things well. As far as our schedule goes, we take it day by day and week by week, we won't know our schedule until this whole thing is taken care, we are just going apt to apt. Thanks for your patience in communication and visits. We appreciate all your prayers!
Who? Mark
What? leaking spinal fluid
When? don't know when this started, and they don't think they will ever be able to answer that really.
Where? that is what we are currently in the process of finding this week
How? to fix it will depend on where the leak is - easier to do if in the spinal column (back) vs. the head.
Why? we don't know why this happened, he doesn't fit any of the "normal" reasons people get these, it's possible that we will know once they discover where the leak is why it started, but like the when we may never know. They also have told us that once you 'spring a leak' it's more likely to come back.
Hope this answers some of the questions you may have. It's a process to go through. But when dealing with things like brain and spinal fluid the less they have to do the better because that decreases risk of infection of bumping something that could cause other damage. We feel very comfortable and confident wtih the doctors where we are, they are taking good care of Mark and explaining things well. As far as our schedule goes, we take it day by day and week by week, we won't know our schedule until this whole thing is taken care, we are just going apt to apt. Thanks for your patience in communication and visits. We appreciate all your prayers!
Monday, July 26, 2010
Happy Anniversary!
I meant to have someone take a picture of the two of us for our anniversary, but never got around to it. However, I did get a picture of this in Rochester, MN - since Eliya's favorite food in the whole world is corn on the cob I thought she'd enjoy it ;)Friday, July 23, 2010
Relay for Life
Originally Mark and I were going to help with the Relay for Life in Amherst this year, but with all the mayo apts we had to cancel - we weren't sure we would even be around. But we did get back from mayo and so to give Mark some peace and quiet and a chance to rest nana and I took the girls over to the event for a couple of hours. It was fun! We were able to do a luminaria in honor of Aunt Alice who continues her brave fight against cancer. Thursday, July 22, 2010
Update
We were able to get Mark in a day sooner on his apt which was great! We saw a wonderful doctor who got things moving in the right direction and got Mark in with all the people he needs to see. Now we are in the process of figuring out where/why he is leaking fluid which will then lead to how to fix it. We are home now through the weekend and will go back on Monday. He has one more test scheduled for Monday and then we meet back with the doctor to find out the course of treatment on Wednesday (whether there is a procedure or medication or whatever he needs to actually fix this). So hopefully we will know more as of next Wednesday. Thanks for all the prayers!
Tuesday, July 20, 2010
Prayers for Mark
It has been quite some time since an update - we are in Rochester, MN right now at the mayo clinic, waiting and praying that Mark can get in. He has an apt, but it is such a process getting in here. Many of you know by now that he has had some pretty bad headaches. We know that he has low CSF (spinal fluid), but don't know why and are hoping that it can be fixed. Thanks for the prayers, I will try to keep updating as we know things through this, as I have found there are computers with internet access available to us here. It may be awhile before I get some pictures up again, but will catch up eventually, i always do ;) Thanks for checking on us!
Sunday, July 18, 2010
Friday, July 16, 2010
Camp Luther Day 7
We were supposed to be at camp until Saturday morning, however, our visit got cut short with Mark's headache being so bad. For the second time it got so bad that his speech was slurred, his balance off and he was vomitting. We tried to take him to Marshfield, but they just gave him pain killers and sent us home to wait for mayo.
Thursday, July 15, 2010
Wednesday, July 14, 2010
Camp Luther Day 5
I didn't take any pictures this day - so instead I'll just journal about some of the fun things we did at camp. They have a new zip-line there, which we didn't do since I was the only one physically able to, but we saw it and it looked awesome. We also took a self-guided tour of the camp and all the villages which was awesome! Whoever built the villages for the campers was amazing - there is even a 'cabin' that is shaped and built like Noah's ark!
It rained quite a bit of the time we were there which somewhat limited out activities. The ice cream social was under a picnic shelter in the rain. The potluck was indoors due to a down-pour. Since Mark was POW we had a tv/vcr in our cabin which came in handy so the girls could watch a movie during all the rain. The beach at camp was awesome - the girls had a lot of fun swimming whenever we could.
It rained quite a bit of the time we were there which somewhat limited out activities. The ice cream social was under a picnic shelter in the rain. The potluck was indoors due to a down-pour. Since Mark was POW we had a tv/vcr in our cabin which came in handy so the girls could watch a movie during all the rain. The beach at camp was awesome - the girls had a lot of fun swimming whenever we could.
Tuesday, July 13, 2010
Monday, July 12, 2010
Camp Lutheran Day 3
Having fun at the beach!
Eliya comes down the slide
Rachel LOVES applesauce - and it's even better with an XL spoon!
We had two carriers for the younger two kiddos. Micaiah had the sling and Rachel got the backpack carrier.
do you like the shoes on the young feet??? Seems like a trademark for Gabie and Rachel.Sunday, July 11, 2010
Camp Luther Day 2
Part of the reason we had to get to camp on Saturday is because Mark had to give the sermon on Sunday. Part of his sermon had Eliya's teddy bear in it as an object lesson. Rachel also had mom on her toes in church when she laid down on the floor ready to throw a fit and I realized she didn't have underwear on! Ugh! So I passed Micaiah off to the lady sitting behind us and hauled her back to our cabin to fix the situation. (note to self, don't trust 3 year old when says she's ready - double check!).
Micaiah was so cute with her dress and matching bow
Daddy and Micaiah
Micaiah posing with Elie's teddy bear before church.
I thought Rachel's hair was so cute for church - she had it pulled out by the time we got back from church.
In the afternoon we played earth ball with a counselor - they loved chasing the huge ball up and down the hill. Mark and I just sat and marveled at the energy kids have!
It was pretty warm out in the afternoon so we kept Micaiah cool with a water bottle
Micaiah was so cute with her dress and matching bow
Daddy and Micaiah
Micaiah posing with Elie's teddy bear before church.
I thought Rachel's hair was so cute for church - she had it pulled out by the time we got back from church.
In the afternoon we played earth ball with a counselor - they loved chasing the huge ball up and down the hill. Mark and I just sat and marveled at the energy kids have!
It was pretty warm out in the afternoon so we kept Micaiah cool with a water bottle
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